How Great Is Our God!

Today was a very tough day for me. It probably didn't help that Mia didn't sleep well and so I didn't sleep well. I am definitely against co-sleeping with your kids (aren't you scared you're gonna roll over them...), but Mia had to sleep with me last night because she just wouldn't sleep in her bassinet. As a result I didn't sleep well either because I didn't want to roll over her on accident!

We headed over to UCLA this morning to do another dye test. This time I knew better than to let them strap my child down before they were ready to go...so she only cried during the test. I want to say unfortunately, but I have to remind myself that God designed Mia this way and so a better choice of words would be to say that we found something else wrong with Mia. They weren't able to put a catheter in her vagina because she has a very small piece of skin fused across it. There is a tiny hole, but the catheter doesn't fit in there. The radiologist was not surprised and said that this is rather common and it just needs to be cut open, but she's not the person for that job. Needless to say, we weren't able to get any information that her intestinal doctor wanted and we are waiting to here back from him on what he wants to do next and when he wants to do it...so right now we are in a holding pattern for that. I kept asking myself, why God...why did you design her this way and being upset that she'll have to have another "procedure" when I realized that is the wrong attitude and I needed to ask God for forgiveness. He knows exactly why and I don't need to know the reasons necessarily. This is how He knit her in my womb and she is perfect.

We then headed to the ear, nose, throat doctor and got really good news. There doesn't appear to be any scarring at this point, but she wants to see her in 6-8 weeks just to be certain. In the mean time, we'll keep putting drops in her nose.

Then Mia was very happy to be heading home as she was done being poked...and definitely not "love pokes". She slept the whole ride home and we've been enjoying being back at home again. Thank you for continuing to pray for our little girl! We go down on Wednesday to see the craniofacial team and a quick check-up with her cardiologist. We'll keep you posted on what's happening there.

Heading to LA

Lisa and her mom are leaving tonight to go down to LA for Mia's appointments tomorrow. They will be staying with kind friends who have housed us a lot since everything with Mia started. Tomorrow morning at 9am (hence why they didn't want to leave Bakersfield in the morning), Mia will have dye put in her lower half of her intestine again. This time they are hoping to get a better picture of exactly where in the vagina the intestine connected. The last time it wasn't much fun for Mia, so pray that it would go quickly and smoothly. Later that day Mia will meet with the doctor that did her nose surgery and she will assess whether or not she needs to go back in and remove any scarring that happened. This, of course, won't be fun for Mia either as she'll have a camera stuck up her nose. :( Pray that there isn't a need for further surgery and that she's healed completely at this point. If she does need another surgery the doctor already told us she can do it during another one of her surgeries because it is a really quick procedure. Pray also for safe travel for Lisa, Mia and her mom. We'll give you an update tomorrow when they are back home.

7 Hours Of Sleep

It was amazing...Mia slept 7 hours straight last night. Brad fed her at midnight and I had to wake her up at 7am to feed her. Now, unfortunately, we didn't get 7 hours of sleep...I woke up a couple of times thinking, she's got to start crying soon...and of course we had to get up at 6am to get ready for the day. But if she continues like that, it would be great.

As for eating, she's doing well...we'll see how much she weighs next week at the doctor's office. And as for her nose, she seems to be doing really well also, we'll see what the doctor says next week.

Happy Easter!

We had a really nice Easter today. We went to church and relaxed with family and friends in the afternoon. Mia got all dressed up in her "Easter" dress and we got some pictures of her. Mommy tried to make her smile, but right now Daddy's the one with that ability. The other night Grampa Flash (Because he likes to take pictures) got a cute picture of Mia in another one of her new hats!

Good Friday

Here are some recent photos of Mia. She got a sweet lamb cap from her Nana Naomi. And she's getting better at holding her head up. She struggles with getting her head off the ground if I lay her on her tummy, but she's been doing better recently. She's also thinking about rolling over...I can turn her on her tummy on one side and she'll get real close to pushing herself back over. She's eating a lot better and last night she slept for two 5 1/2 hour stretches, which was heaven for Mommy and Daddy. Enjoy your Easter!

She's Doing Great

Mia is doing so well. In fact, we've noticed that she is eating much better...before we were so thankful if she got to 50 cc's and now she's been eating anywhere from 70-90 cc's a feeding. If we hadn't told you she had a surgery, you wouldn't be able to tell now. It's amazing how quickly she's healed. Here are some photos from the experience.

Pre-Surgery: Hey this Pedialyte stuff isn't so bad!

Post-Surgery: Mama, I was so hot, thank you for taking the blankets off me so I can sleep now!

Today, sporting my UCLA Bruins Shirt...Can you tell I had surgery?

Home Again Part 2

So quite a bit happened yesterday with Mia. They ended up stopping her feeds at 2am because she was going to get a CT scan and they wanted to sedate her for it with anesthesia. She fed really well at 2am and was still sleeping when I called at 6am. We got to the hospital at around 9am and she was still doing fine as long as someone was holding her and she had her pacifier. What we learned though was that she didn't have a scheduled time for her CT scan, they were just going to try to work her in and that could be anywhere up until 4pm. Needless to say she hasn't had any food and is only on IV saline...not even sugar water. So we were a bit concerned that this could be extremely overwhelming for her. So there were a lot of turns holding her taking place. At 11am they called and said she was scheduled to go at noon. We were relieved and knew we could make it to noon. So we wheeled her down at noon to the CT scan, but when we got there we found out that the anesthesiologist wasn't available and they wouldn't know when he would become available. So we were waiting there in the hallway for sometime. The reason she needed to be sedated was because they needed her to hold perfectly still for the CT scan because it was going to be 3D and any movement would make it blurry and not useful. At around 1pm there was still no more word about the anesthesiologist and Mia was sleeping again at this point, so the x-ray tech asked if we wanted to try without anesthesia because if she slept, then that would be fine...so we said OK, let's try. So we brought Mia into the room, set her down and she woke up, but she was wrapped tightly and there were blankets to keep her from moving a lot and she was sitting there perfectly still. So, to make a long story short, she was awake and still and we got the scan done and it turned out great as far as we know. And she didn't need to have anesthesia. Of course then she could have eaten all day, but you don't know that's how it will work out until it is done. Because she didn't get anesthesia the doctors were very happy with sending us home and not keeping us one more day, it was a very nice feeling being able to come home. Mia slept the entire way and has been sleeping all night (minus a few times to wake her and feed her). She seems to be doing well and we are thankful. God had a neat way of taking care of the day.

Home Again

We're home, Mia is doing well, we'll blog about it tomorrow! Thank you for your prayers!

Tired But Thankful!

Mia's surgery went really well today, thank you so much for praying. Her last feeding was at 5:30am and we didn't know how she would do with pedialyte after that, but she took a feeding of pedialyte at 8:00am and was just fine with it, so we were very relieved about that. Around 10:00am she started to get upset because she was hungry again and they weren't ready to put her under yet, we were still waiting in pre-op, so we were trying everything to keep her happy and finally they gave her a bit of oral sedative before they took her off to surgery at 10:30am.

Her surgery went really well, it took only about an hour and a half, the doctor told us after that the hardest part was getting an IV in her prior to the surgery, that took 45 minutes itself! Thankfully she was already out from the anesthesia, but she has a bunch of poke marks on her hands and feet where they had tried.

After her surgery they said that Mom could go down and see her baby in the recovery area. This was the hardest time of the day for her because they said, "here hold your baby and calm her down" and nothing she did seemed to appease her. She tried feeding her, rocking her, singing to her, and it would work for a few moments, but then she was really upset again. They even gave her some more pain killer, but that didn't seem to make her happy. She was down in the recovery waiting for a bed space in the PICU (Pediatric Intensive Care Unit) and they finally said, ok we can take her up. Well, when we got up to the PICU they took her temperature and it was around 39 degrees Celsius which is 102 degrees Fahrenheit! She was miserably hot. And they had kept putting warm blankets on her downstairs because it is so cold in the basement...she just was uncomfortable...do you blame her? Needless to say as soon as they uncovered her she put her hand over her eyes and went to sleep.

She's already started to feed again and she's done fine with that and they continue to give her pain medicine so she isn't hurting. She's doing really well! And they want to keep her overnight to monitor her heart, but they will probably send us home tomorrow afternoon.

We also found out that her lower intestine did connect to her vagina (which is where we wanted it to connect) and they want to run one more test on that in a couple of weeks to get a clearer picture of where on the vagina it attached exactly. Then we imagine they'll be scheduling her anal opening surgery.

We also met with a craniofacial team member and tomorrow morning Mia is getting another CT scan of her skull so they can better determine how to proceed with that. Unfortunately they are going to put her under for that again, so they are not going to give her food after midnight tonight...just IV fluids. Pray that she will be able to tolerate that and if not that they would be able to give her a sedative to calm her down.

Today was a long day, but we look back and are so thankful for all of the outcomes, it's just neat to see God continue to heal Mia and work in her little life. Around 10:00am this morning, we just felt an overwhelming sense of peace in spite of Mia being upset and fussy and we know that was the body of believers praying for us and God carrying us through this day...thank you!

Please continue to pray for the next couple of days as Mia will continue to be sore as her nose heals.

A Good Day

Today was a good day in LA with our doctor visits. We arrived in LA with plenty of time to spare (no traffic), which was really nice! Thank you God! Our first visit was at radiology where they put dye in Mia's lower intestine to see where it connected. The process was not fun for Mia, but she got through it. The part that wasn't fun was the fact that they had to tie her legs down and her upper body down so that she wouldn't move during the x-ray. We haven't heard the results yet regarding that, but we are hoping they'll let us know tomorrow.

We then went upstairs to meet with the geneticists. They asked us a lot of questions about our family history and they want to run some more tests because of the early fusing of her sutures, so we'll learn more about that later. At this point all of her tests have come back normal.

The cardiologist then stopped in to see Mia and thought she looked great before her surgery tomorrow.

At this point, I realized we needed to call and find out about Mia's surgery time for tomorrow. So I quickly dialed in to talk to a gal who told us that her surgery time is 10:30am and she's expected to be at the hospital at 8:00am. She then told me that Mia can't eat anything after midnight except for clear liquids...and formula/breast milk is not a clear liquid. I nearly died...we've never fed her anything but formula/breast milk...I don't know what she'll think of pedialyte...that was the recommendation. Brad told me not to worry though and later that evening I got a call from the anesthesiologist who told me that she can have formula up until 5 hours before her surgery and that she can have clear liquids up until 2 hours before her surgery. We can do that...so her last feeding will be at 5:30am and we have to be to the hospital by 8am, so she might even be hooked up to an IV before we need to give her clear fluids...thank you God!

So, please pray that everything go smoothly tomorrow and that if she does have to take pedialyte that she does just fine with it. Pray also for her recovery as I am sure she'll be hurting after the surgery.

Butterfly Wishes

Tomorrow we leave to go down to LA for some pre-operation appointments for Mia. We'll be staying down there since her operation is scheduled for sometime Tuesday (we won't know until we call on Monday to find the time). I don't know how people do it...getting everything organized to go...especially with a baby. Thoughts have been running through my head as I try to plan out how many of this we'll need and what if we need more of that...I applaud any parent who ventures out with their baby for more than a day trip! Anyway, we are close to being all packed and ready to go, which helps take off some of the stress for me. Some things you can pray for:

1. The dye test tomorrow to see where her intestine connected.
2. The geneticist visit. I don't even know how to begin to pray for that.
3. Scheduling of Mia's surgery.
4. That she would eat well in her last feeding prior to the surgery because she has to last for 6 hours after that feeding.
5. The skill of the nurses and doctors as they prepare her for surgery and do surgery.
6. Recovery from the surgery, that it would go smoothly and she would heal quickly.
7. Our visit with the craniofacial team to discuss what must be done with Mia's skull.

I know that we serve an awesome God and that He has already used Mia's life and will continue to do so for His glory. It is just such a blessing to us to know that so many people are praying for her all the time. Thank you!

On a side note...Brad was feeding her late last night (letting me get much needed sleep!) and after he fed her, she was asleep in his arms, so he kissed her cheek and she let out this real laugh...not that her other laughs haven't been real, but he said it was a nice laugh.

Only A Few More Days

Mia is scheduled for nose surgery this coming Tuesday...only a few more days. It is hard to believe we are getting to a "next step". We will be going down the day before as we have some appointments with the GI doctors (they are putting dye in her intestine) and the geneticists. We believe the geneticists will talk to us about the results from her CHARGE test. And then sometime Monday we will call in and know what time her surgery is on Tuesday and what time we have to be to the hospital prior to the surgery. I'm starting to get anxious as it is getting closer and we haven't done this before, so pray that my heart would be calm and that everything would go smoothly.

She's A Sack Of Potatoes!

I've never liked potatoes so much...Mia now weighs 10 pounds 5 ounces. The pediatrician was very pleased with how she looked today. She liked the fact that she's tracking really well with her eyes and she's sticking her tongue out. She also liked that she's starting to make noises. She thought she had made quite a bit of progress developmentally since our last visit. It was a really good visit...thanks for praying! We know she's gotten this far because of all those prayers and the God we serve who is graciously answering them.

Eating

Mia is back to being fussy with her feedings. So please pray that she'll desire to take more food and then do it. Please pray for patience for me because I can get a bit frustrated when she doesn't want to eat. It is just that we work so hard to get her to gain weight that I don't want her to lose any weight. We have a visit to the pediatrician tomorrow, so we'll see how much she weighs then.

Can You Believe It's March?

It is hard to believe that it is March 1st! It seems like just a little while ago we were coming home from the hospital and getting adjusted to this parenting thing. Now it is pretty much routine. Mia continues to do well. Some days she feeds really well and other days she is not so interested in food, but we always manage to get into the 500's for food intake. At this point I am trying not to worry that she isn't getting enough, I'm trying to trust in God that she'll continue to gain weight and grow. She'll get weighed on Tuesday when we take her to our pediatrician for a routine check-up. No more news yet on what's happening with her skull, my understanding is that they'll look at her when she is in the hospital for her nose surgery.

As for this coming week, it's pretty calm. She does get her monthly synagis shot on Wednesday. She gets one of those every month during cold/flu season to keep her from getting sick. Please continue to pray for her feedings and her continued growth and weight gain.

We got some first laughs out of Mia yesterday...very cute.

Please continue to pray for the twins, Feliciy and Charity. Their parents found out they might have eye damage with potential for blindness and once again their tummies aren't handling food appropriately. Also, baby Maddy got to go home from the hospital, so praise God for that and continue to pray for them as they transition to being home.